Joint Pain

CRIME almost always causes pain. But what about pain that causes crime?

It’s Wednesday, April 22, 2009 and Colin Lindner, 59, is standing
before the law in the Magistrates Court at Mount Barker.

The former
motor mechanic hasn’t been reckless behind the wheel, hasn’t robbed a
bank or raised a hand in anger. But still, he is a law-breaker.

Now
Lindner is standing before Magistrate Clynt Johansen in terrible pain,
something he endures each day. It’s the pain of fibromyalgia.

The
condition has no obvious symptoms, but today, Johansen can see it.

“He
had trouble standing up straight, and looking at his face, it was drawn,
he was ashen-faced and he was obviously in pain,” Johansen recalls.

But
feeling pain is not a crime. Lindner’s offence was that he went looking
for relief, and found it in marijuana.

A DOZEN years ago, Colin Lindner was living what he describes as
“just a normal Australian life”. A mechanic, he’d fixed buses for
Greyhound Pioneer before setting up an auto repairs workshop at home.

Home
is the hilly 33ha farm at Balhannah at the end of Lindners Road - named
for his father, who bought the place for a song in 1936.

When he wasn’t
stripping engines or replacing clutch plates, Lindner spent time on his
favourite hobbies - fishing and music. He played guitar and synthesizer
in a local cabaret band.

“Look, my life was just
no different than any Australian life,” Lindner, now 60, says.

He’s
sitting in his yard, shirtless in the Saturday sun, smoking cigarettes
and drinking milk from a coffee mug.

Cows are swishing their tails on a
nearby hill and a blue heeler called Jake is yapping madly. “I had a job
... I could do my hobbies, whatever I wanted to do.”

But
around 1998, life took a turn that would change all that. It started at
work.

“I noticed that, using my hands, my muscles would become really
painful when I was stressing them out, you know, especially taking out
gearboxes and doing clutch replacements or engine rebuilds or whatever. I
just thought it was just a part of pushing yourself a bit hard.”

He
also knew that probably wasn’t true. This pain was different. And it
wouldn’t go away.

When tests by local GPs could find no cause, he was
referred to pain specialist Dr John Graham, who ran more tests and came
to the same dead end.

In the meantime, Lindner’s
condition was worsening, the intensity of it - “an aching throbbing pain
that drives you virtually insane” - so bad he began withdrawing from
life, work, his music.

“I just had to pull the plug and say to the guys
in the band, ‘look, I’m stretching things here, I mean, I’m using
alcohol and I’m drinking excess amounts of alcohol to combat the pain’.
And you’re virtually nearly pissed, just to turn around and perform in
front of the public, so I retired from that in 2000.”

In
2003, Lindner was referred to an Adelaide rheumatologist, who
eventually gave his mystery ailment a name - fibromyalgia. “I said ‘what
the hell’s that? Never heard of it’.”

Most people
haven’t. It is a chronic, multi-system illness causing all-over muscle
pain, fatigue and disturbed sleep. It is estimated between two and 10
per cent of people have the condition, which can also cause anxiety,
depressed mood and joint stiffness. The pain is usually aggravated by
physical activity.

The condition can range from
mild - where sufferers can live mostly normal lives but a few flights of
stairs can seem an insurmountable challenge - to severe, where
sufferers are totally incapacitated or bed-ridden, particularly when the
condition overlaps with chronic fatigue syndrome.

It
can come in extreme forms. Frances Bremer, wife of former US ambassador
to Iraq, Paul Bremer, was reportedly in such agonizing pain from
fibromyalgia she couldn’t bear to touch the jagged edges of a brown
paper bag.

“My clothes began to hurt,” she said. “I would lie in bed and
then change from one nightgown to another. It was like my blood was on
fire.”

Lindner is grateful his pain isn’t so bad,
but his condition is still severe. In the years following the onset,
Lindner was forced to close his business and ended up on sickness
benefits. Like many sufferers, he found himself on a
not-so-merry-go-round of doctors’ appointments, medications and
alternative therapies.

One drug worked when
nothing else would - OxyContin, an opioid derived from opium, like
morphine. Lindner currently takes up to 200mg a day and says he would be
“stuffed” without it. “I couldn’t handle the pain,” he admits.

“Just
say, for instance, I wanted to mow the lawn, I have to abuse the
morphine because the moment I start doing any physical exercise it
inflames the muscles. And unless you’ve got enough morphine in your
blood stream ... you’ll burst out in about seven out of 10 pain. You’ve
just got to hit it with morphine until it backs off.”

Relief
comes at a cost. The drug, he says, has a list of side effects “as long
as your arm”. He suffers constipation and dehydration and the
medication has rotted through all his teeth, top and bottom.

Around
2000, someone suggested cannabis to relieve his pain and keep his
opioid intake down. He started growing it. Lindner was smoking the weed
regularly when the authorities picked up the scent. On April 19, 2007
they came knocking with a warrant.

By the time
they left, they’d recovered three cannabis plants growing hydroponically
in Lindner’s house, four plants growing hydroponically in his shed and
12 plants growing in pots in the yard. They also found 1.5kg of dried
cannabis in bags.

Prosecutors initially charged
Lindner with possession of cannabis for sale or supply. The charge was
dropped. “I was doing it for my own purpose,” Lindner insists.

But
the law’s the law. And that’s why, on April 22, 2009, Colin Lindner
stood in Mount Barker Magistrates court, pleaded guilty to his crimes
and waited for Magistrate Johansen to throw the book at him.

But
when Johansen looked at Lindner’s face he saw pain, not a criminal. His
remarks were measured, even sympathetic. They were also somewhat
unguarded, and were picked up by a reporter from the local paper who was
in court on the day.

“I think it is fair to say
at your age you are unlikely to develop a psychological or psychiatric
illness as a result of smoking cannabis,” he said. “You do use cannabis
and obviously obtain pain relief from using it. You need medication for
your pain.”

He went on.

“I
think Parliament might need to grasp the nettle and make a decision
about the use of this type of drug for people in your very difficult
situation with pain management difficulties. It is not necessarily only
those suffering from this illness but others suffering various types of
cancer where they are in constant and sometimes overwhelming pain.

“I
say nothing about young people who use this drug for their own personal
gratification. My comments are restricted to people with pain
management issues.”

But they would not be
restricted to the walls of Mount Barker’s Magistrates Court. The story
made the local paper and the TV news and went all the way to the office
of the former Attorney-General Michael Atkinson.

Legalize marijuana?

Come
off the grass, Mr Atkinson told the ABC. “We are not going to allow our
anti-drugs system to be breached in this way because once the breach
was opened up for so-called medicinal cannabis, it will just lead to
cannabis for everyone,” he said.

No
arguments here, Magistrate Johansen tells saweekend, adding he stands
by his remarks “even more so” in light of their public airing.

“This
more modern cannabis is addictive. It’s also an introductory drug to
the harder drugs. That’s all scientific evidence. But where you’ve got
someone facing imminent death, through cancer, through any other type of
illness or severe on-going pain management issues, I say forget the
science, give them the pain relief they need. I mean, isn’t that the
human way to do things?”

He’s not alone in his
view. So-called medical marijuana is legally available in some European
countries and Israel. It is legal in 14 US states, most notably
Colorado.

The state capital Denver, with a population smaller than
Adelaide, has reportedly become the “cannabis capital” of America, with
more “pot shops” than Starbucks, state schools and liquor shops.

In
Australia, cannabis remains illegal, although doctors here have
acknowledged the potential benefits, while at the same time cautioning
about the risks.In 2006, the Australian Medical Association said it
considered cannabis “may be of benefit” in HIV and cancer-related
wasting and in nausea and vomiting in people undergoing chemotherapy.

But
the association said more research was needed to determine the medical
benefit of cannabis in neurological disorders such as multiple sclerosis
and in “pain unrelieved by conventional treatments”.

Cannabis is
thought to have an effect on pain because of the presence of the
chemical THC - one of a number of “cannabinoids” in the drug.

“We
know now in the spinal cord there are receptors called cannabinoid
receptors, marijuana receptors, which down regulate the activity of the
pain system,” North Adelaide rheumatologist Dr Richard Kwiatek explains,
neither advocating nor condemning the drug.

“So there’s a solid
rational scientific basis for why it might work, at least in a
proportion of people.”

Some experts say smoking is
the most efficient way to deliver THC to the body. But it’s also a
harmful one, which is one of the reasons medical pot has been so
controversial.

A number of legal, “synthetic” forms have been available
for several years and in January there was news of a push by the Royal
Melbourne Hospital’s neurology department to trial a liquid
marijuana-based mouth spray for the symptoms of MS.

Magistrate
Johansen says people in chronic pain should have the freedom to choose
cannabis. “In my view, they are people that need some help, they are not
criminals. I reflect my sympathetic view in the penalty I impose.”

But
sympathy can only soothe so much. When Colin Lindner left the court in
2009, he still had fibromyalgia. He had a black mark against his name,
too, and one less method to manage his pain.

Like
other chronic, unexplained conditions, fibromyalgia has baffled the best
medical brains for decades. The term, which translates as fibrous
muscle tissue pain, was coined in 1976 but describes a condition that
may have been around for hundreds or thousands of years. Some claim it
was described in the Bible and that Charles Darwin and Florence
Nightingale were sufferers.

What baffles experts
most is the absence of any “organic” cause. Researchers have looked to
genetics, viral infection, abnormalities in growth hormones and brain
chemicals and physical and emotional trauma as possible triggers - but
have found no universal cause.

As a result, the
condition has struggled to gain legitimacy and snake-oil salesmen have
found a niche with dozens of “miracle cures” on the internet. For years
many patients were told the cause of their pain was purely
psychological.

But thanks to the efforts of
experts like Dr Kwiatek, there has been a shift in thinking towards more
rigorous, evidence-based approaches.

“There’s no
dispute these people are feeling pain, they’re not making it up,” Dr
Kwiatek says. “The dispute is why have they got this pain?”

He
has spent more than 20 years trying to find out. In the late 1990s, he
led a team at the Queen Elizabeth Hospital that found reduced blood flow
in the thalamus and brain stems of women with fibromyalgia.

The
results, which excited researchers around the world when they were
published internationally in 2000, confirmed previous studies into
reduced blood flow in the thalamus.

But the
discovery of reduced blood flow to the brain stem, which connects the
brain to the spinal cord, was significant and unexpected.

The findings
pointed to “under-active” nerve cells in areas where blood flow was
reduced. It was valuable proof of some real, physiological defect in
sufferers, but vital questions remained.

Was the reduced blood flow a cause, or the response of the chronic pain?

A decade later Dr Kwiatek can answer with some certainty.

“We
think the blood flow is reactive of changes of how the brain works;
it’s not the cause of the changes, it’s reactive to it.”

Now, studies
are suggesting the cause may lie in glitches which cause sufferers to
become “hyper-sensitized”.

Within the body’s
nervous system, pain messages are being amplified, like a radio’s volume
being turned up. At the same time, some stimuli to the body are being
misinterpreted as pain. Sufferers can feel like they would if they’d put
their hand over a flame or banged their thumb - even when there’s no
fire or hammer.

Dr Kwiatek calls the whole painful
scenario a “very intriguing set-up” of the way the circuitry of the
central nervous system works. Intriguing, and for now, still a mystery.

“To deal with this group of disorders one has to be comfortable with
dealing with uncertainty, medically. It’s not black and white.
Unfortunately some of my colleagues have trouble dealing with that.”

JENNY Faulkner will
always be grateful Dr Kwiatek has had no such trouble. The Ingle Farm
woman has suffered with the condition for more than 20 years and says he
saved her life, although he didn’t know it then.

“I
was quite suicidal after a work injury because no-one understood what
was happening,” she says. “I didn’t ever have a death wish, I never
wanted to die, I just didn’t know how to cope with it.”

In
the early 1990s, Dr Kwiatek ran an information session through the
Arthritis Foundation of SA. Faulkner, overwhelmed by pain and fatigue,
saw the ad and went.

“From that day, for me, the lights went on because
they began to show me that I wasn’t crazy. I’d been on a medical
merry-go-round, 30, 40 different practitioners all saying ‘you’re more
healthy than I am’. It had undermined the very foundation of who I was;
if this wasn’t real, if you couldn’t have this, what was happening? Was I
crazy?”

Faulkner was empowered. She learned to
manage her symptoms and began to turn her life around. She got involved
with the foundation, helped set up support groups and even wrote her own
literature for GPs and sufferers.

“I began to present it and as I
presented it, hundreds of people would come,” she says. “As I began to
see people around the systems, I realized my story was their story”.

Much
of Faulkner’s efforts have been to have fibromyalgia recognized as a
multi-system illness, requiring a holistic treatment plan, as with
diabetes.

She now works with community organizations as a life skills
educator helping sufferers monitor their sleep, diet, medication, work
and study habits.

“If I said I had diabetes,
people would give me a care plan, they would work with me. Managing any
chronic condition is actually the same, 90 per cent of the time.”

She
has also been working to combat the blunt prognoses sufferers,
particularly the young, are often handed in doctor’s surgeries. She
calls it hope.

“You have to give people hope. The negative health
message is always ‘you have fibromyalgia. You just go home and you live
with it.’ If you don’t know what you’re living with, you can’t live
it.’’

TWO years ago, Pamela James
of Oakden came to the same conclusion. Then 21, she had been suffering
from the condition from the age of 13.

“I got really bad and I started
getting really depressed and I got to a point where I was suicidal,” she
says. Like Faulkner, she didn’t want to die, she just didn’t know how
to cope with the pain.

“I’m better now. I’ve been seeing a
psychologist.” James believes her condition may have been triggered by a
traumatic experience as a child.

At 10 she suffered chronic migraines
and was “sick all the time” with colds and flu. “Then all of a sudden,
in Year 8, I started getting really sick, I had trouble walking stairs
and I changed schools,” she says. “In Year 9, I started collapsing all
the time and it got to the point where I couldn’t walk.

“It
was scary and I basically just dropped off the face of the earth, I
didn’t see any of my friends, I was just pretty much in bed for nine
months. No-one knew why I left school and no-one knew that I was sick.
It wrecked my whole life – everything just collapsed around me.”

James
managed to finish Year 12 through an open access college and is now at
university. She describes her pain as “stiffness, soreness, aching,
burning” and was recently diagnosed with chronic fatigue syndrome which
means she needs rest during the day.

“It stops
me from doing a lot of things like housework and going to uni; like I’m
at uni but I struggle. And going out with friends and stuff, it stops me
doing a lot of that as well because I just get too tired to even talk
on the phone.”

But life goes on and James is determined to
live it. She has reconnected with old friends through Facebook and
complements her pain medication with regular physio- and hydrotherapy.

“Every
day is different. But I’ve been pretty good. I’ve got some really
supportive friends around me and a supportive boyfriend and it’s easier
now. But when I get severe days, and I may have four severe days in a
row, by that fourth day, I’ve had enough. And I’ll be teary and I’ll get
depressed. But then I just try to think well, at least I’m still
alive."

COLIN Lindner faces each painful day
with the same determined will to carry on. But it is a worried life.
With the pain of his condition and age against him, managing the basics
is becoming increasingly difficult. He fears he is “on the doorstep” of
constant care.

“But I don’t want constant care,” he insists. “I
like my own independence, everybody does.” Yet that independence is
already much compromised.

“Gone are the days where you’d plan ahead to
do certain things. You can’t because you don’t know what you’re like
until you get up the next day. I’ve just got to play it day by day.”

Jake the blue heeler is still yapping like crazy. “Jake, don’t lose the plot. It’s too early yet.”

If
you’re suffering from depression and need someone to talk to, call
Lifeline Australia on 131114; For more information about Fibromyalgia,
contact the Southern Chronic Illness Links Network.